On 20 April the second Focus Group was held in Florence, at the headquarters of the Associazione Trisomia 21 Onlus, with parents of children with Down syndrome, as part of the Horizon2020 project "EUROlinkCAT - Establishing a linked European Cohort of Children" with Congenital Anomalies ". The Tuscan Registry of Congenital Facts at the Institute of Clinical Physiology of the CNR of Pisa, in collaboration with the Fondazione Toscana Gabriele Monasterio, is one of the twenty-two partners involved in the project.

Among the objectives of the project, particular attention was paid to the involvement of families of children with congenital anomalies, focusing on four specific abnormalities: congenital heart disease in children treated with surgery, spina bifida, labioschisis and Down syndrome.

Anna Pierini participated in the Focus Group as the first facilitator with the task of leading the discussion, together with the second facilitator, Amanda Neville, President of EUROCAT and Head of the IMER Register - Congenital malformations congenital Emilia Romagna, and Professor Jane Clemensen.

Through the Association 8 parents were recruited (2 couples, in addition to 3 mothers and a father who participated individually) aged between 38 and 58 years.

The discussion was stimulated by the selection of the following keywords: "discovery", "birth", "daily life", "support and information", "Social media and Associations", "future and research".

The parents went through the phases of their experience, from the communication of the first diagnosis, in prenatal age or birth, up to the difficulties with which they clashed for the recognition of the necessary services, both in the health field and in the school environment.

The parents expressed their interest in the project and are available for future collaboration in the perspective of greater involvement of families for a communication no longer oriented only to specialists but also to the parties directly involved. This will make it possible to improve the information required by families of children with congenital anomalies and to establish research priorities, to ensure a more effective dissemination of research results.